The hope that never was

Ever since hope arrived in the form of a possible liver resection 14 months ago, I have always been absolutely sure that I would be one of the people that would be saved by it. My chances were always smaller than average, as there were a couple of shadowy figures on the part of the liver that was to be left behind. They were unsure whether they were cancer or not, but the operation was considered worth a shot in the small hope that they were not. I just knew for sure that I would be one of the “lucky ones”.

Of course, we found out a couple of weeks ago that there were two “new” spots, and I saw the liver surgeon for a follow up today, which revealed the the growths he saw during the laproscopic procedure of my liver were indeed these shadowy figures, not new ones. Last weeks scan also showed two small spots of cancer in my lungs, which it is suspected were also always there from diagnosis, just at that stage too small to be seen. He deliberately kept me off chemo for as long a time as was “safe”, before attempting the operation, in order to let the cancer “show it’s hand”. There was no way that he wanted to take a 50% chance with what was left of my life if it was always going to be futile.

I could never have been saved by the liver resection.

The surgeon asked how I was coping emotionally, seeing as the operation didn’t go ahead. I just kind of waved my hand and told him that I’d already moved onto the next “thing”. I think he could see I was quite genuine in that, and not blocking things out, or holding them in. Finding out about the lung spots was sobering, of course, I mean HOLY FUCK LUNG CANCER…but at the same time, I am as well read about this disease as I can be and I know fully well it is bowel cancer on my lungs, and not primary lung cancer, and these things behave very differently. I am already back on chemo, it will, if it follows a normal path, attack all areas of cancer in the body no matter where they are.

I said to the surgeon that I was glad I had the hope that his surgery had offered over the last year or so, as it was easier to live when it existed than it is to live now. And then I have proceeded to think about those words over the last few hours, as I try to take yet another turn of events in.

What a miracle the last 14 months have been. What a revelation. In all honesty, what a fucking TRIUMPH. I’ve run ya’ll through a few of these things before, but if you will indulge me, I’d like to run through them again in a little more depth. Let’s start with my looks.

This was me a year or so before being diagnosed with cancer:

This is me, a couple of months ago:

I draw your attention to my image, because actually, these two pictures illustrate perfectly the transformation in me in the last 14 months.

What you see above is more than a bit of hair dye and make up and a nice dress, and the dropping of a few kilos. What you see above is actually the manifestation of a person that was always on the inside of me, finding the courage to make it to the outside.

And, it’s much more than even that. I say this with absolutely no ego, but it’s a light that shines out of me. It’s a light that comes from giving yourself a shake and saying “come on old girl, you don’t know how long you’ve got. You CAN’T keep fucking this up”. As wet as this might sound, I quite literally decided that I wouldn’t die with my light still inside me, and I set about making sure that I didn’t.

That dowdy girl in the dowdy grey top, with the plain hair? She was happy enough, but she just existed really. The thought of reaching her full potential was something that lived in the periphery of her mind. I think she would have got there one day, but she thought she had time, and she would have done it in a slovenly fashion.

The red girl? She was the one that felt the grim reaper breathing down her neck. So she went to writing masterclasses. She found the courage to pitch articles and got them published. She always knew she could write, but she wrote about divisive subjects that she knew would divide people, and she stood behind them, and she GAVE NO FUCKS about the criticism that might and sometimes did come with that. She made new friends, deepened friendships she already had, and she left a bit of style cramping dead wood behind, because ain’t nobody got time for THAT. She learned to forgive people for little things, and for very big things, things that went right back to her childhood. Things that put her in the grey top, and the smile that didn’t go right to her eyes. The same things that hold ALL OF US back, the same things that stop the light shining from ALL OF US.

So, if you are reading this, do this for me. Find what makes you shine (and you probably already know what it is), and start making steps towards it. They can just be baby steps, but make them. Plant the seed, sew the fucker, DO IT NOW. You don’t need perspective the way I got it, and believe me you don’t want it. You do it, while you still have all the innocence of someone who has a lot of years in front of you. Because, by the law of averages, some of you haven’t and you just don’t know it yet. Don’t worry about whether people like you or not. In fact, if you don’t give two fucks, there is much more chance they WILL. If what brings your light out is a little quirky, a little left of centre, that doesn’t matter either. If it doesn’t hurt anyone, DO IT. You don’t need approval from anyone. And if you stop seeking it you will receive the ultimate respect, from other people, but more importantly, for yourself.

I’ve lived a lifetime in the last 14 months, on the back of a hope for a cure that we now know never, EVER existed. These microscopic cells that lingered in my lungs, the dark and shadowy things in my liver remnant, the writing was already on the wall for me.

But the thing is, what was written was the destination, not the date. I accept that, barring a miracle, I will die of cancer. Five percent of people diagnosed at stage 4 are still alive after five years. Nobody knows who is going to be in that five percent, so for now, I have decided that I will be one of them. Logically a year or so has passed already, so perhaps I have four? Logically, in that time there will be new drugs, new targeted therapies, and the hope for ever more time. Who knows? Look what I have achieved in 14 months. Imagine what I can do in FOUR YEARS.

Because no one knows that date, I am not going to work towards it. Day to day will become year to year, and I’ll just keep going. I’ll just keep doing my thing, and doing new things, and being authentic and true to myself, and I want to take you along for the ride. I’ve got a hunger. Haven’t you? Don’t die with your light inside you. At least I know, I won’t.

28 Comments on “The hope that never was”

You are such amazing woman. You are so strong. I absolutely love reading your blogs. You have become a part of my daily life. Even though I don’t know you personally I feel as if I do. Your words are always in my mind and you are the one that often gives me the kick I need.

If I have ever read anything that is so completely the embodiment of “live for the NOW” then this is IT. I don’t know you except through reading what you write, and from what others have posted about you, but I so completely believe that it won’t matter whether you have 4 years or 4 days or forever because every single moment of that time will be filled with you.

Wow… I’ve been following your wonderful insights for sometime now …. I’m on that cancer rollercoaster right now. So much of what you say rings true for me…you are amazing,you are making a difference and we are so much richer for having read your wise words xxxx

You are an amazing woman! I love reading your blog posts and i cannot wait to read your book. As the person above stated you have become a part of my daily life too. Much love from one of the many, many people cheering you on!

My god Jules. You already know I love you. I meant what I said on facebook. I’ve read this over and over and every time it’s like a big warm bear hug and then just the sitting down and talking to that I needed. I can apply this to just about every aspect of my life right now. You are amazing. Incredible. Thank you so much for writing this xxx

Your post left me in tears. Tears of sorrow for you but also tears of joy because damn, woman, you have grabbed life by the horns and told it to PAY ATTENTION. You go, just go, and leave your indelible mark on the world, which will be a better place for your having been here. Do your damnedest and I will too. Be your own wonderful self. You are wonderful. Thank you and may the universe bring blessings on your soul <3

Length or quality…. Thank you for writing that today. You have made me re-examine my life and I thank you for it.
Please God, you are able to continue doing your inspiring work – the world needs you, so don’t even think you are leaving us yet! xxx

I have been reading your blogs for a long time now but this is the first time I have given my husband one to read. I have been trying to get him to retire before we are too old to do all the things we want. He is 68. As you say, by the law of averages we may not get “old” ( we don’t consider ourselves old yet). I know your writing has given him something to think about. I hope you realise what an amazing person you are and what an inspiration you are to so many people.

As we have all come to expect, that was beautiful, awesome, thought provoking. If words can somehow make up for time, yours have that power. You are changing mor than just your corner of the world! Thank you.

This essay is such a kick up the arse for me (mentally at least). I’ve had battles with chronic illness, and it’s given perspective, but this? This post could give me purpose.
Thank you.
I was wondering if it would be ok for me to share this on my Twitter? I know some people who would just love it

Jules, thank you for reminding us all not to forget to LIVE! I know how it feels to be in the grey top. Sometimes I feel like I’m barely here, even though I have beautiful children and an awesome man. I’ll keep reading your posts, you really do feed the soul with your wise words, honesty, big heart. I’m so sorry you are in this situation but you are right. None of us know how long we have, including the experts sometimes. I truly hope you are in that 5%.

(Smile)…….you are completely right. None of us are guaranteed a tomorrow. Yet we often exist like we have all the time in the world and then some. We don’t. When my grandmother died a few years ago I said “That’s it! I’m going to squeeze the living shit out of life. Enjoy everyday like it’s my last”. Today you have reminded me of these words I promised myself. Thank you.